Waiting for a Change

“At the time I have decided, my words will come true. You can trust what I say about the future. It may take a long time, but keep on waiting––it will happen!” Habakkuk 2:3

About a week and a half ago, we noticed Alex wasn’t acting like himself. Instead of being good-natured, he was irritable. Instead of being logical, he was irrational, jumping to ridiculous conclusions. In addition, his OCD, which is usually controlled well by medication, was heightened as he kept repeating the same questions and phrases. From years of experience, Ed and I recognized these telltale behaviors as a likely sign that Alex once again had yeast overgrowth in his digestive system, which affects his behavior negatively.

Fortunately, his doctor understands the impact yeast has on Alex’s behavior and trusts our diagnostic skills in this area. After I sent his doctor a brief email describing our suspicions and requesting a refill of antifungal medication, he responded quickly and assured me that he had sent a prescription to the pharmacy. When I went to pick up the antifungal, I was pleased and surprised to discover that his doctor had authorized enough refills to last a year. Clearly, he recognizes the negative effect yeast overgrowth has on Alex, and he trusts our judgment in giving medication as needed to help Alex heal.

As we have found from experience, the antifungal medication makes a difference quickly. Within an hour, we see Alex become more docile and less edgy. Within two hours, he’s content and calm, and the OCD behaviors seem to disappear. Because he responds so favorably to the antifungal, our suspicions regarding what made him irritable are confirmed. Since we have dealt with these infections repeatedly for years, we know what to expect and are always grateful that the medicine works fairly rapidly to make Alex feel better. Waiting is easier because we don’t have to wait long to see changes, and we are confident he will get better.

A few days ago, Ed came home from work grimacing and holding his left hand on his lower back. Some Google searching had allowed him to diagnose himself with his first kidney stone. Despite my suggestion to go to the emergency room that evening, he decided to try to treat the ailment himself by drinking water and taking over-the-counter pain relief medicine. The next morning, when the pain was getting worse instead of better, I made an appointment for him to see his doctor, who confirmed that he did, indeed, have a kidney stone. Even though his doctor prescribed various medications to help the nausea and pain as well as to help the stone pass, Ed was suffering from what he described as the worst pain he’d ever experienced in his life.

At that point, we knew he needed to go to the emergency room, but with Alex, plans always need to be made carefully so that he doesn’t get upset and overreact. A quick phone call to my parents, who thankfully live only ten minutes away, solved the problem. My dad, who has dealt with kidney stones over the years and could empathize with Ed’s pain, would take him to the ER while my mom and I stayed home with Alex to keep him calm. As we waited, we prayed that Ed wouldn’t have to wait long for his pain to ease.

About an hour later, my dad called to tell me that everything was going well and that all of the medical staff had been kind and helpful. In fact, the doctor taking care of Ed had suffered from kidney stones, too, so he could relate to how painful they are. When the nurse gave Ed intravenous pain medicine, she assured him that he would feel much better within twenty minutes. While that intensely painful waiting time must have seemed much longer, the nurse’s prediction was accurate: Ed’s pain level dropped from the highest rating of 10 down to 1 in twenty minutes. Moreover, as the doctor had predicted, Ed was relieved to be able to pass the stone last night fairly painlessly without any further medical intervention. Just as with Alex, the right medical treatment makes all the difference in the world, and experiencing positive changes makes waiting for complete healing bearable.

While I hate that Alex and Ed had to suffer needlessly, both of these experiences show how things can change suddenly for the better. So much of life is spent waiting and wondering when things will change. Many times I have sat in waiting rooms, wondering how much longer before my turn would arrive or even if they had forgotten about me. The longer I waited, the more I became frustrated and began questioning if I should just give up and leave. Nonetheless, the waiting eventually ended, and my turn always arrived, despite my lack of patience.

Similarly, the longer we deal with Alex’s issues related to autism, I can become discouraged waiting and wondering if things will ever change. However, experience has taught us through the years that things do get better in time. We wondered if he would ever sleep through the night, and in time he did. We began to lose hope that he would ever learn to use the toilet independently, but after years he finally did. We questioned if he would ever be able to carry on a conversation with us, and now some of our sweetest moments are spent chatting with our fascinating and entertaining son. Somehow the longer time passes, we think these changes for the better are less likely to happen, but we continue to wait for the appointed time God has designated for these milestones.

Thankfully, I was raised by loving parents whom I can always trust for help, support, and comfort, so I know that I can also trust my heavenly Father to take care of my family. When my parents told me the other evening that they were on their way to help us, I had no doubt that everything would be all right. Knowing that help is coming makes the waiting easier to take. Similarly, I can trust that God’s help is on the way, so I don’t need to despair. If we didn’t have to wait in life, there would be no real need for faith. Moreover, the longer I live, the more of God’s goodness I see, fulfilling His plans, while making the waiting less wearisome and more worthwhile, as I know that healing will eventually come in His perfect timing.

“I wait for the Lord, my soul waits, and in His word, I put my hope.” Psalm 130:5

What I Am Going to Do

 

In the spring, I made a life-altering decision: this would be my last year of teaching. After thirty-three years of teaching middle school English and working with fantastic fellow teachers, I knew the time had come, just as my retired teacher friends had told me I would know. Although some of my friends and colleagues were surprised by the seeming suddenness in my early retirement plans, for months, God had shown me in various ways that I had finished with this stage of my life. After prayerful consideration, heartfelt conversations with my family, and financial calculations, I knew I was ready. Consequently, I have been completely at peace with finishing my career and looking forward to the future. After making my decision official, I never had even a twinge of regret or wistfulness, which confirms that I am doing the right thing at the right time.

What surprised me, though, was the question that many people asked me once they heard of my retirement: “What are you going to do?” I suppose, since I am retiring at the earliest eligible age, this inquiry makes sense. However, my impression of retirement was that it meant no longer having to do something. Because the question was not one I had anticipated, I didn’t really have a good answer. Moreover, I realized that for the first time in my life I did not have a detailed, organized plan, and I didn’t have alternate plans in case my original plan didn’t work. Amazingly, I was fine with that, which is totally out of character for me. Consequently, I knew my decision was guided by God’s plans and not my own.

I didn’t need to think about my future plans for long because the three people who know and love me best had ideas for me immediately. My mom, a retired teacher herself, is thrilled with my decision and suggested that now I will have time to take my blog entries and edit them into a book about autism. That is a project I have mulled for a while and will definitely take into consideration. My husband noted that now I will be able to get up and make breakfast for him every day. I think he was kidding; if not, he will be sadly disappointed. However, since he wholeheartedly supports my decision, he may be the recipient of donuts from my early morning trips to the bakery. Perhaps the most pleased by my retirement plans is Alex, who excitedly told me, “We can watch Price Is Right together every morning!” Now, that’s a plan I can embrace!

Aside from the suggested writing, cooking, and watching television, I will have time on my hands to fill. Those concerned that I will be twiddling my thumbs or eating bon bons in my free hours need not worry. What am I going to do? I am going to take care of Alex, just as I have for the past twenty-five plus years. What I have realized in the past several weeks is that only a few people who know our situation well understand what taking care of Alex truly involves. Because I have chosen to focus on the positive and tried not to complain about life with autism, I may not have presented a clear picture of what being a caregiver to an adult with autism actually requires. I suspect if people only knew, they would be less likely to ask me about my retirement plans.

So, what am I going to do? This summer my plan is to help Alex get well. Currently, he has probably the worst case of candida overgrowth he has ever had with cheilitis and thrush irritating his mouth and throat. A month ago, he had a virus that affected his appetite, so we have spent the last several weeks encouraging him to eat, trying to find things that appeal to him. The thrush complicated the situation by making even his favorite foods taste bad, and his sore mouth and throat makes eating painful. Consequently, our already thin boy has lost weight, which is concerning. His primary care doctor has prescribed an antifungal medication, which seems to be helping, but from past experience, we know that candida is hard to control, and it will take time before he’s well. We have an appointment to see his doctor again in a few weeks and are hoping that he will be better by then.

In the meantime, we know that he needs proper nutrition to heal, so we constantly encourage him to eat healthy foods. Compounding this issue is that we recently discovered that his lithium level is higher than it should be, leading to tremors that make eating with a spoon or fork nearly impossible. To make matters more complicated and frustrating, the nurse practitioner who oversees his medications has been incommunicado, and despite my best efforts to contact her, we have been put in a position of making medication decisions ourselves. Fortunately, Alex is responding well to the changes we made based upon research, but we never should have been put in this position in the first place. Nonetheless, we are literally spoon feeding Alex ourselves five or six times a day, just as one would an infant. Thankfully, he is also responding well to our coaxing him to eat, and we are seeing improvements in the variety and quantity of foods he will eat.

Along with the actual acts of caregiving, I find myself engaged in constant prayers not only for Alex’s healing but also for guidance so that we know how best to help him. Once again, I find myself having to develop my faith and patience as I wait for God to reveal His plans and to heal Alex. So what am I going to do? I am going to wait on the Lord and keep myself busy taking care of my precious boy. While that may not sound like an exciting way to begin retirement, I know that is what God wants me to do and will help me to do, and I have no doubt that the rewards will be absolutely worth the effort in the end.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11

Finishing Strength

 

In our house, the month of May tests our endurance. As Ed and I finish up teaching for the school year, we find ourselves engaged in grading multiple papers and exams, sitting through end-of-the-year meetings, and trying to maintain the enthusiasm we had in August with students who would rather be outside enjoying the nice weather. Even though Alex continues his schedule of support services throughout the summer, May always seems to be difficult for him, too. Because he is quite intuitive, he likely senses the stress Ed and I feel trying to accomplish everything we need to do, despite our best attempts to keep things calm for Alex. In addition, the high pollen counts and unpredictable weather with varying air pressures along with his concerns about severe weather, namely thunderstorms and tornadoes, makes May difficult for him, as well.

Recently, he apparently caught the virus that was going around and making people lose their appetites. Fortunately, he doesn't seem to be in any discomfort and hasn't complained of anything bothering him. Not wanting him to lose weight and strength, we have encouraged him to eat and drink whatever appeals to him. Although he has been compliant, his diet still includes a limited range of soft foods, such as applesauce, pudding, and scrambled eggs. We keep trying to tempt him with foods we know he loves, but even when shrimp or meatloaf nears his mouth, he makes a face indicating disgust and tells us he’s not hungry. Our formerly meat-loving son who would eat nearly anything placed before him has become a vegetarian who favors fruit. However, we know with Alex that phases pass about as quickly as they appear, so we try not to fret about his current eating habits.

Other than his appetite, Alex appears healthy and content, still energetically happy hopping through the house and enjoying his usual activities. However, we have noticed that the tremor in his hands caused by one of his medications seems to have increased, making eating more difficult for him, and requiring more assistance from us. In addition, he is not as eager to go places as he usually is, which makes us think he’s still not completely recovered from the virus he had a couple of weeks ago.

The other day, Ed mentioned that he had noticed a white film in Alex’s mouth when giving him pills in the morning, and he wanted me to take a look in his mouth. Armed with a penlight, I couldn’t see any redness or sores, but I did see the telltale milky film we see when he has yeast overgrowth in his digestive tract. After more than a year of having the yeast under control, the beast sadly seems to be back. With the extremely warm and wet weather we’ve been having along with an immune system compromised by a strange virus, Alex was susceptible to the invasion of yeast in his digestive system. No wonder he hasn't been interested in eating much! However, we were thankful that the usual primary symptom––irritability, sometimes displayed in a meltdown––has not been present.

Fortunately, we had the prescription medication Diflucan on hand and gave him a dose on Friday and will give him the second dose tomorrow, praying that one round of antifungal will wipe out the yeast in his digestive system and heal him. Next weekend, we will take him for his routine six-months lab tests, which will help his doctors and us see if anything else could be contributing to his change in appetite and increased shakiness. In addition, he has his usual biannual appointment scheduled in a couple of weeks with the nurse practitioner who oversees his anxiety medications, so we can consult with her about our concerns. Hopefully, he’ll be all better by then so that we can spend the appointment talking about how well he has done since he last saw her in December.

With all the other stresses at the end of the school year, I really didn’t need having to worry about Alex’s normally healthy appetite being off. Feeling overwhelmed and fatigued, I have briefly toyed with the idea of having the lesson plans for the final two weeks of school for my middle school students revolve around watching YouTube videos while playing with fidget spinners. Of course, they would be thrilled, but I know that’s not what's best for them. Moreover, I know that I would not be giving them my best, which I always strive to do. With eight class days to go with my students, I will pray for strength, patience, and peace, knowing that God has me where He wants me to be for now, relying upon Him and waiting for what He has planned, and continuing to hope for Alex’s complete healing.

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.” Isaiah 40:3

The Yeast Beast

 

“But when it is a bad plant, one must destroy it as soon as possible, the very first instant that one recognizes it. Now there were some terrible seeds on the planet that was the home of the little prince; and these were the seeds of the baobab. The soil of that planet was infested with them. A baobab is something you will never, never be able to get rid of if you attend to it too late. It spreads over the entire planet. It bores clear through with its roots… ‘Children,’ I say plainly, ‘watch out for the baobabs!’” Antoine de Saint Exupery, The Little Prince

Every May I teach the novel The Little Prince to my honors seventh grade students. Last week as we were discussing the problem of the baobabs, we talked about the symbolic meaning of those terrible plants. As we brainstormed what the baobabs might represent in today’s society, my students suggested rumors, wars, pollution, and disease, to name a few issues. We talked about the importance of not procrastinating and taking care of problems right away so that they did not get out of hand. The more I thought about the insights they shared, the more I realized that we have been dealing with a baobab of our own for several years: Candida overgrowth in Alex’s digestive tract.

As I have mentioned in previous blog entries, Alex has a tendency to develop thrush in his mouth and throat, which likely spreads to the rest of his digestive system. Not only does this fungal infection make his mouth and throat sore, but it also significantly impacts his behavior. Often the obvious symptoms that he has a Candida flare are increased OCD behaviors, agitation, and even aggression. Over the years, we have treated this problem with various prescription antifungals, such as Diflucan, Nystatin, Ketoconazole, and Itraconazole, along with natural antifungals, including caprylic acid, oregano, garlic, and undecenoic acid. In addition, we have boosted his immune system with vitamins B, C, and D and increased the good bacteria in his system with probiotics. Nonetheless, keeping Candida under control has been a constant battle, and like the baobabs, we try to destroy it as soon as it appears, knowing how physical and emotionally uncomfortable it makes Alex.

This week I also ran across two articles in my continual research for ways to help Alex that suggest a link between fungi and brain disorders. In an article from The Economist published October 24, 2015, entitled “Fungus, the bogeyman: A curious result hints at the possibility dementia is caused by fungal infection,” this potential link is described. [To read this article, please click here.] Citing information published in Scientific Reports, the article describes research done by Dr. Luis Carrasco at the Autonomous University of Madrid in Spain. While the cause of Alzheimer’s disease is still unknown, Dr. Carrasco’s research suggests fungal infection is linked to the disease.

After examining brain tissue from cadavers, none of those who did not have Alzheimer’s had any fungal infection. However, all of the Alzheimer’s patients had fungal cells growing in their neurons. What they could not discern was whether the fungal infection caused the Alzheimer’s or whether the Alzheimer’s made the patients more susceptible to fungal infection. The article also notes that many patients with Alzheimer’s have damaged blood vessels, and Dr. Carrasco noted fungus growing in blood vessels. Although more research is needed to clarify the link between Alzheimer’s and fungal infections, this report indicates potential benefits of treating elderly patients with antifungals.

In another article I read this week, the connection between yeast infections and mental illness is discussed. The article “Yeast Infection Linked to Mental Illness,” published May 4, 2016, on the Johns Hopkins Medicine website discusses research done by Dr. Emily Severance and her associates at Johns Hopkins University that was suggested by people with mental illness. [To read this article, please click here.] This study found that a history of Candida yeast infections was more common in people with schizophrenia and bipolar disorder than in those who do not have these mental illnesses. In addition, they also noted memory loss in women with Candida infections. While researchers are careful not to name yeast overgrowth as a cause of mental illness, they note that more research needs to be done regarding connections between mental illnesses and gut-brain connections and weaknesses in the immune system.

While these recently published research studies are linking fungi to Alzheimer’s, bipolar disorder, and schizophrenia, the link between yeast and autism has been known for years. Thanks to the research of Dr. William Shaw of The Great Plains Laboratory, the importance of diagnosing and treating fungal infections in children with autism has been part of the biomedical protocol. Dr. Shaw’s laboratory offers Organic Acid Tests that detect fungal byproducts produced in the intestinal tract that are absorbed into the bloodstream and later filtered into the urine. In addition, his laboratory offers yeast culture and sensitivity tests that recommend which antifungal medications are most effective in treating the strains of yeast found in the organic acids test. We have had both tests run on Alex several times and have found the results very helpful in trying to address his yeast overgrowth problems. Pursuing this course of treatment has been extremely valuable to us because when the yeast is under control, the difference in Alex is night and day. Clearly, the yeast makes him uncomfortable, affects his brain, and impacts his behavior negatively. Within a short period of being on antifungals, he returns to his sweet and pleasant disposition. Consequently, we destroy our baobab­––yeast––as soon as possible.

Clearly, more research needs to be done on the role fungus plays in various disorders that affect the brain: Alzheimer’s, schizophrenia, bipolar disorder, and autism. If, indeed, fungus causes or exacerbates these conditions, aggressive treatment with antifungals may improve the symptoms or perhaps even cure the conditions. On the other hand, if the root cause of the disorders is weakened immune systems, improving immunity with vitamins may also improve or cure the conditions. Instead of simply viewing Alzheimer’s, schizophrenia, bipolar disorder, and autism as mental conditions, doctors need to recognize physical conditions that impact the brain and affect the behavior. Until a more holistic approach is taken with these disorders, more and more people and their families will suffer the consequences of undiagnosed underlying medical conditions that could be healed, substantially improving the quality of life for the patients and their families.

“But for you who fear my name, the Sun of Righteousness will rise with healing in His wings. And you will go free, leaping with joy like calves let out to pasture.” Malachi 4:2

Breakthrough

As I have explained in previous blog entries, Alex has been dealing with chronic candidiasis, or yeast overgrowth, in his digestive tract for many months, which is fairly common in children with autism. From the time he was a baby, we have treated him for yeast infections every few years, but they always responded to medication and were not as stubborn as this current round. In June 2012, a doctor diagnosed him with thrush and cheilitis, fungal infections in and around his mouth. Since then, we have repeatedly taken him to doctors, who have treated him with runs of antifungal medications and probiotics, hoping to rid his body of these pesky infections. In addition, we were blessed to find a family doctor last spring who emphasizes restoring Alex’s immune system through vitamins and nutrition so that his body can fight infection better.

As we have dealt with the yeast the past year and a half, we have noticed the same pattern repeat itself: Alex becomes irritable, impulsive, and obsessive as we then notice his saliva becomes milky and white spots appear in his mouth. Once he begins taking antifungals, not only do his physical symptoms disappear, but his behavior also improves significantly. His doctor pointed out that when Alex doesn’t feel well, he is just cranky, and his behavior reflects that irritability. While we certainly don’t want Alex to suffer from the thrush, we don’t want to suffer his wrath when he’s feeling ill, either. Consequently, we keep working with his doctor to get this fungal infection under control.

Last month we took him back to his family doctor again with the same symptoms: white spots, milky saliva, and increased agitation in his behavior. Once again, the doctor confirmed what we suspected—the thrush had returned despite two months of taking daily doses of the antifungal Diflucan. During the time Alex was on the medication, he was healthy and happy, and we had a terrific summer with him behaviorally. However, within a couple of weeks off the antifungal, we saw a decline in his behavior along with the telltale physical signs of thrush. This time his doctor wanted to try a new medication to see if it may be more effective long term and to prevent Alex’s body from becoming resistant to Diflucan. He prescribed the antifungal Itraconazole, which Alex takes twice a day, for six months if needed. Once again, we hoped and prayed for healing with this new medication.

Within a few days, we saw improvements in Alex’s mouth and behavior without any negative side effects from the medication, which was a blessing. In fact, last week, which marked three weeks of being on Itraconazole, was one of the best weeks we have ever had with Alex. Moreover, he was the best he has been in his life in terms of his behavior, mood, interaction with others, and speech. One improvement is that he has been more independent and focused, entertaining himself by reading and watching television instead of relying on Ed or me constantly. Not only has he been cooperative and pleasant, but his language skills, which have always been his greatest weakness, have also shown huge gains in a remarkably short time. Instead of speaking in short phrases or sentences with syntax, or word order, problems, he has been speaking clearly in complete, often complex sentences. Also, we have been working with him for many months to talk loudly enough to be heard instead of mumbling, and he has recently been speaking with an appropriate volume so that we don’t need for him to repeat himself. With this breakthrough in speech, we now have a much better idea of what he is thinking. For example, the other night, he asked me, “As people get older, does their metabolism slow down?” After all the years he has struggled with articulation (speaking clearly), volume, syntax, and generating speech, despite years of speech therapy, he finally has found his voice, thank God. Perhaps now that he can express himself, he feels less anxiety and frustration, which has helped his behavior. Perhaps now that he’s feeling better, he feels less need to engage in impulsive and compulsive behaviors. I truly believe that we are finally seeing answers to our incessant prayers for healing.

Interestingly, this week we received test results that we had run a few weeks ago before we began seeing the huge improvements. I had asked Alex’s doctor if we could run an organic acids test with yeast culture and sensitivity through Great Plains Laboratory to see what his urine and stool indicated as far as yeast and metabolism. We had not run one of these tests for about ten years, and we were curious to see what the tests might indicate. Although Alex’s doctor was not familiar with the test, he agreed that this test would be worthwhile after I showed him previous test results. Not surprisingly, Alex continues to show yeast overgrowth in his system as well as some metabolic issues that previous test results have indicated. Once again, his doctor and I will discuss what steps need to be taken to improve his health, but the current antifungal definitely seems to be a step in the right direction.

From our experience, I encourage other parents of children with autism to consider investigating the organic acids test to see if their children might benefit from the biomedical interventions the test recommends if results are abnormal. Dr. William Shaw of the Great Plains Laboratory has a special interest in autism and has done extensive research trying to find ways to help children with autism. His website [which can be accessed by clicking here] has considerable information and resources that offer help and hope. The remarkable improvements we have seen in Alex after having gone through terrible experiences with aggression indicate that proper medical treatment can make huge changes in the life of the child with autism. We kept hoping and praying for Alex to get better, and now we see that he can be better than we ever even envisioned. Through the grace of God and the help of doctors, Alex is getting better, and as parents, we are truly grateful.

“O Lord my God, I cried to You for help, and You restored my health.” Psalm 30:2

Lab Tests

As I explained in my last blog post, Alex has been dealing with a chronic case of thrush for over a year. Despite several trips to doctors and urgent care clinics along with a variety of antifungals, we keep trying to get rid of this stubborn candida in his mouth. Last weekend, his doctor decided to try another antifungal medication to see if it may be more effective. In addition, he has concerns that the thrush will become resistant to the one medication we know works, Diflucan. We started the new medication this week, and so far, Alex seems to be responding without any negative side effects. Hopefully, this will be the one that finally knocks out the fungus for good. However, this may be a slow process, as his doctor gave enough refills for six months of this medication.

Since antifungals can affect liver function, Alex’s doctor wanted a blood test run to make sure the medication was not causing any damage. Last Sunday, we took him to the laboratory where we have his routine blood tests done because we never have to wait long, and their staff are friendly and pleasant. As they rapidly processed Alex’s paperwork, he happily watched a football game on the big screen television in the waiting room. Within minutes, the lab technician came to get us to draw Alex’s blood, and we recognized her because she has drawn his blood for previous tests.

Before we began, we reminded her that Alex does very well with blood tests; in fact, they never seem to bother him at all. As she placed the tourniquet around his upper arm before drawing the blood, she told him that she didn’t like tourniquets “because they hurt.” I’m not sure why she put such a negative spin on this step necessary to the blood test, so I quickly told Alex that they never bothered him in the past. Before she stuck the needle in his vein, she then told him that it would “just hurt for a minute.” Alex looked at me, and I reassured him that it would only be a little stick for a second, which was true and less upsetting. As always, he did great while his blood was being drawn, never flinching or complaining. After she was finished, she placed a bandage on his arm and instructed us to keep the bandage on for about twenty minutes. I told her that Alex never bled more than a pinprick after blood tests, and she replied, “Some people tell me that, too, and then they look to see blood running down their arm.” As my mom would say, this lady was a real “crepe hanger,” finding all the worst-case scenarios in a situation. Fortunately, I know Alex much better than the technician does, and he handled the test beautifully despite her frightening comments. Thankfully, blood did not run down his arm, and he seemed unfazed by the lab technician’s warnings.

In addition to his blood tests, I had asked Alex’s doctor about running a test his childhood doctor had done several times in the past, the Great Plains Laboratory organic acids test with yeast sensitivity and culture. This test assesses intestinal yeast and bacteria and determines which medications and supplements best treat the condition. Although Alex’s doctor was not familiar with the test, after showing him previous test results, he agreed that this test would be helpful in treating Alex’s chronic yeast overgrowth. With his authorization, I ordered the test kit, which arrived on Friday. Since we had not done one of these tests for several years, I had to refresh my memory as to how the urine and stool collection were to be done to make certain the results were accurate. For example, certain fruits, namely apples, grapes, raisins, pears, and cranberries, and their juices must be avoided for twenty-four hours prior to the test. The samples must also not come in contact with water; therefore, the “nun’s cap” specimen collector I purchased several years ago for tests makes the process easier since it fits nicely in the toilet. With all the paperwork completed and instructions clear, I was ready to play amateur lab technician with the single rubber glove they sent me. (Why they don’t send two gloves has always been a mystery to me.) Now, the rest was up to Alex to produce the samples.

Just as he is a trouper with blood tests, Alex is amazingly cooperative about urine and stool tests. In fact, he gets excited about these tests, asking when we’re doing them and when we’ll get the results. I suspect that he likes the numerical statistics that come with lab reports, but he also tells me that he likes the tests “because they’re rare and special.” His enthusiasm helps me deal with the gross factor of collecting the samples, especially the stool sample that needs to be made into a slurry before sending it to the lab. I’ve discovered the old saying to be true: to paraphrase, the more you stir it; the more it stinks. Nonetheless, Alex produced a good stool sample yesterday, and I managed to produce the slurry without gagging. The second part of the test required collecting his first morning urine, and this morning, he came through with flying colors, giving way more than was needed. Once again, I collected his sample, placed it in the test kit container, and was thankful we were able to complete this test easily. Tomorrow, we’ll have it shipped to the lab and await the results and hope to gain insight into what is lurking in Alex’s gut. While I wish that Alex didn’t have to deal with the yeast overgrowth that has chronically plagued his digestive tract, I’m thankful that we have a doctor who will aggressively pursue curing him and that Alex handles lab tests fearlessly and even happily. And now, as we so often do with Alex, we just wait to see what the tests reveal.

“Search me, O God, and know my heart; test me and know my anxious thoughts.” Psalm 139:23

Divinely Designated Doctor

Yesterday we took Alex to the doctor for a follow-up appointment after two months of taking the antifungal medication Diflucan for thrush, yeast overgrowth in his mouth. As I mentioned in a recent blog entry, Alex has made great progress over the past couple of months. We believe that healing has been the main reason he has improved in many ways, including being calmer, showing mental sharpness, and speaking more clearly. Although we had hoped that two months of Diflucan would finally clear up the thrush that has plagued him for over a year, we saw signs of decline this past week since he finished taking the medicine last weekend. Instead of being content and easygoing, Alex has been irritable and obsessive. Knowing that we were taking him to the doctor, we bided our time this week and gave in to Alex’s requests to take two baths per day, which seemed to calm his nerves—and ours.

Before we left for his appointment, I asked Alex if I could look at his mouth, and he was cooperative about letting me take a peek. The inflammation, milky saliva, and telltale white spots explained his behavior this week: he has thrush again. Knowing that he was likely to be impatient if he had to wait long at the doctor’s office, I called the receptionist to see how the schedule was running. She told me that things were running on time, but a couple of minutes later, the nurse called to tell me that the doctor was about fifteen minutes behind schedule and suggested that we plan to arrive a little later so that Alex wouldn’t have to wait, which we really appreciated. Fortunately, his nurse understands Alex quite well, always turning the blood pressure/pulse monitor so that he can see it as she takes his vitals and allowing him to read her notes on his chart, knowing his interest in medicine and mathematics.

When we arrived, we were immediately taken back to an examination room, and a young man took Alex’s vitals, telling us that the nurse had reminded him to let Alex see the blood pressure numbers. After he wrote down the information, he turned the chart around for Alex to see, but as I told him, Alex had read the chart as he was writing because he can read upside down, which seemed to impress him. Thankfully, we didn’t have to wait long to see the doctor, who also understands Alex very well and interacts with him in a way that is compassionate yet never condescending. As he held out his hand to shake Alex’s hand (and as usual, Alex offered his left hand instead of his right hand), Alex showed what his behavioral therapist has taught him by shaking hands and saying, “Nice to see you,” which delighted the doctor, Ed, and me.

He then addressed Alex, commenting that he was reading a research article that made him think of Alex, and he began asking me about what amino acids Alex has taken. We discussed taurine and theanine, both of which Alex had taken in the past with some positive results, and I explained that Alex had negative side effects with tryptophan, which made him hyperactive. I also shared with him, since he is also an emergency room physician, the article I mentioned in my last blog entry about trauma surgeons using a combination of vitamin D, omega fatty acids, progesterone, and glutamine for patients with brain trauma. Since he placed Alex on three of those four supplements, he found that research interesting and recommended that we try glutamine, which he thought would be helpful. As we discussed the research we had read, he commented that he believes that divine guidance leads him to what he needs to know, and I totally agreed with him. In addition to his kindness toward Alex and us, our shared faith gives me complete confidence in Alex’s doctor.

After Ed and I explained the improvements we saw while Alex was on antifungals along with the decline we have seen this week post-antifungals, the doctor agreed that the thrush had likely returned, and his examination confirmed our suspicions. We discussed the problems of keeping him on Diflucan, which can lose its effectiveness over time, and the need to check Alex’s liver function, which the medication can affect. After consulting his electronic guide to medications, the doctor suggested another antifungal Alex had not tried, and he prescribed this medication daily for another two months. In addition, he gave us lab orders to have Alex’s liver function assessed through a blood test, which we will do this afternoon. Also, I asked him about running an organic acids test with yeast sensitivity and culture, something we had done with Alex in the past. While he was not familiar with the test, he listened intently as I explained the benefits of this urine and stool test that diagnoses metabolic issues and yeast overgrowth and additionally makes treatment recommendations. Apparently, my summary of the test was convincing, as he enthusiastically agreed that we should run this test on Alex. Consequently, I will soon be playing amateur lab technician, collecting Alex’s first morning urine sample and making a “slurry” of his stool to send to Great Plains Laboratory. Hopefully, this test, along with his blood test, will provide us with some guidance as to how to treat this aggressive yeast overgrowth.

Even though dealing with Alex's having thrush for many months has been frustrating and worrisome, we are very grateful to have a doctor who understands our concerns, works cooperatively with us in trying to help Alex, and interacts with Alex in such a positive way. For example, the last time Alex saw him, he kept staring at the doctor’s watch.  Without hesitation, he took off his watch, and with total trust, handed it to Alex to examine. Alex took a quick glance, gave the watch back to the doctor, and told him, “The date is wrong,” which made the doctor laugh, change the date, and comment on how smart Alex is. Just as Alex’s doctor believes that divine intervention leads him to the research he needs to help his patients, we believe that divine intervention has led us to him: God knew the doctor we needed to take care of Alex. Despite our concerns that the thrush stubbornly keeps coming back (or perhaps never really goes away), Alex’s doctor assures us that he’ll keep working until Alex is finally well. With a doctor who inspires confidence like that and who relies upon God's guidance, we know that healing is coming, and we anticipate that blessing eagerly.

“For since the world began, no ear has heard and no eye has seen a God like You, who works for those who wait for Him!” Isaiah 64:4

A Week in the Life with Autism

This past week began Autism Awareness Month, and many people whose lives have been touched by autism have used this time to make others more cognizant of this epidemic. For parents of children with autism, awareness involves more than wearing the distinctive autism puzzle-piece logo or lighting blue lights. Autism awareness is a way of life for us. Yesterday I read an excellent blog entry written by an autism mom who detailed a typical day in the life of her family. [To read this article, click here.] Impressed by her devotion and her willingness to share what her life is really like, I decided to try and do the same. However, I got bogged down thinking about how much time we spend giving Alex pills and fixing food for him throughout the day, as well as helping him with tasks he cannot complete on his own. Instead of providing an hourly report as she did, I decided to write about the highlights of our past week so that others can see that having a child with autism—even an adult child, like Alex—entails planning, coordinating, and supervising in ways different from those of parents of typical children. With that in mind, here is a glimpse of last week with the Byrnes.

Saturday—We had a 10:00 appointment with Alex’s new doctor, who wanted to see him a month after his last visit to see how he was progressing with the supplements he had recommended. After I explained how we had gradually phased in vitamin D, gentian violet, probiotic with prebiotic, and vitamin C over the past few weeks, the doctor carefully examined Alex. Fortunately, the yeast overgrowth in and around Alex’s mouth has improved, but he still has some thrush and cheilitis. The doctor suggested increasing the doses of vitamin C and probiotic/prebiotic and gave us a prescription for the antifungal drug Diflucan. He also noted the acne on Alex’s face and recommended a progesterone cream to decrease the inflammation and prevent secondary infection. We were once again impressed with this young doctor’s enthusiasm about making Alex healthier and his compassionate manner.

Sunday—Alex seemed pleased with the contents of his Easter basket. Since he is on strict gluten-free and milk-free diet, we always have to be creative when it comes to treats for him. Fortunately, he is a fan of Kraft Bunny Mallows marshmallow bunnies, jelly beans, and marshmallow Peeps (specifically the blue bunnies), all of which are allowed on his diet. In addition, I found him some nice paperback books in the children’s nonfiction section of Barnes and Noble on some of his favorite topics: the sun, the moon, the earth, thunderstorms, and earthquakes. While I was at the bookstore, I also found a small "computer sitter" figure of Sheldon from The Big Bang Theory, which is one of his favorite television shows, and a street map of towns in Northwest Indiana, where we live. Of course, the last thing I grabbed—the street map—was his favorite gift.

Monday—I received a letter in the mail that elevated my blood pressure from Indiana Medicaid, who provides disability services for Alex. In a previous blog entry, I explained that they had sent us a letter in January threatening to cancel Alex’s benefits because they alleged that I had “failed” to send them his financial records. After several calls to them, they discovered that they had received the information I had sent in a timely fashion, but someone had forgotten to note that in his file. Fortunately, my organization skills and tenacity prevented his benefits from being cancelled. The letter I received this week stated that they had sent us a letter in January indicating his benefits were to be cancelled, and a class action lawsuit had been filed against them because they had failed to notify people properly. Because the letter was not clearly written, I had to read it a few times before realizing that they hadn’t actually cancelled his benefits, which made sense because they have been paying for services for him the past few months. However, to be certain, I logged onto their website, looked up Alex’s files, and discovered that he was still covered. While I was relieved that his benefits were still in place, I wasn’t pleased that they had me worried and that I had to double check to make certain his status was correct.

Tuesday—We took Alex to one of his favorite places, the Target Café, for a snack of potato chips and Sprite. Ed and I have decided that outings to the Target Café provide us with a nice break, as well, since Alex happily watches people come through the store, and an added bonus for him is when small children, whom he finds especially amusing, appear. With something tasty to eat and drink and a good people-watching view, Alex thoroughly enjoys himself and smiles the entire time he’s there. We’re pleased that something so simple and inexpensive makes him happy. Besides, Ed and I are also fans of the hot pretzels they serve there, too.

Wednesday—Alex’s behavioral therapist came for her weekly session with him. Before she arrived, I did my regular inspection of our main floor to make certain that the house looked nice before she arrived. In addition, I filled out his weekly behavioral report for her, noting any issues we had observed during the past week. As usual, I wrote that his primary weakness has been speaking too softly to be heard, which shouldn’t seem like a problem. However, as she has explained to us, not everyone will be as patient as Ed and I are about having him repeat himself. Consequently, we have been working with him to make his voice audible. In addition, she and I worked together on Alex’s newest ploy, leaving in the middle of his behavioral therapy sessions to go to the bathroom. I suggested that she not even mention the topic, as he was likely to obsess on it, and I closed the bathroom door to hinder his efforts to interrupt his session. Our plan worked, as Alex only tried to leave the session once, and I told him to go back because he did not need to go to the bathroom. I think he learned that two women could outsmart him any day of the week.

Thursday—Alex’s case manager who oversees his state disability benefits came to see us to complete his annual level of care survey. The state uses this information to assess what services and funding Alex should receive. To determine his eligibility, Ed and I had to answer several questions regarding his physical mobility, his self-care skills, his self-directional abilities, and his learning skills. His case manager helped us immensely as she was able to explain the nuances of the questions and provide examples of what kinds of skills the questions intended. As usual, Ed and I were in complete agreement on our answers regarding Alex’s strengths and weaknesses. After his case manager left, Ed commented to me that this process was a good news/bad news experience. The good news is that Alex qualifies for disability funding and services; the bad news is Alex has weaknesses that qualify him for disability funding and services.

Friday—Alex was delighted to have books arrive that he had ordered from Amazon using gift cards he’d received for Christmas. He had chosen a book on winning strategies for the dice game Yahtzee, a chart explaining how to bet on the card game blackjack based upon the odds of winning, and a trivia almanac with questions for every day of the year written by one of his heroes, Jeopardy champion Ken Jennings. While he was pleased with these books, he was a little disappointed that another book he ordered had not yet arrived. Because The Handy Science Answer Book is apparently out of print, we had to order it from a specialty bookstore. Although Alex will be thrilled when that book arrives, I will be even happier since I won’t have to listen to Alex ask me if the mail has come, when I think it will arrive, and where I think the book currently is in transit. I just hope he’s as enthusiastic about that book when it finally does get here.

As I reflect back on the past week, I feel thankful that we have found wonderful people to help us with Alex. From his doctor to his behavioral therapist to his case manager, these support people have guided Ed and me with their expertise so that we can help Alex reach his full potential. Now if that Handy Science Answer Book would hurry up and arrive, I would be even more grateful.

“Tune your ears to wisdom, and concentrate on understanding. Cry out for insight, and ask for understanding. Search for them as you would for silver; seek them like hidden treasures.” Proverbs 2:2-4

A New Path

In the more than seventeen years since Alex was diagnosed with autism, I’ve found myself spending a great deal of time searching for resources to help him. Often, looking for people and methods that may help him takes tenacity and patience because those answers aren’t readily found. Other times, things seem to fall into place with such ease, and then I know the hand of God is at work in our lives.

Shortly after we discovered that Alex had autism, I began reading Dr. Andrew Weil’s book Spontaneous Healing, looking for ways to make Alex as healthy as possible. In one section, Dr. Weil discusses cranial therapy, a gentle manipulation of the head believed to improve wellness. At the end of the book, a resources section provides contact information to find practitioners who can provide the holistic approaches Dr. Weil describes in the book. After more research, I decided that I would like to try cranial therapy for Alex and wrote a letter to the address provided in the book requesting a referral.

When I received their response, I was pleased and surprised to find a local doctor of osteopathy who did cranial therapy with her patients. This began a decade long relationship with an outstanding doctor who worked cooperatively with us to help Alex. With her expertise in nutrition, chelation, and cranial therapy, she provided Alex with the care he needed to deal with his food allergies, heavy metals toxicity, and other health issues related to his autism. When she had to retire a few years ago due to her own health issues, we felt a terrible loss, and when she passed away last fall, we felt deep sorrow.

Without the guidance of Alex’s beloved doctor, I have been searching for another doctor who would take a holistic approach to his health and would be willing to follow biomedical methods found to be helpful to people with autism. In the past few years, we have been fortunate to find compassionate and competent medical professionals for Alex; however, other than his psychiatric nurse practitioner and a chiropractic internist, their background with autism has seemed rather limited. Moreover, we have sensed that they were more concerned with treating the symptoms than looking at underlying causes. For example, Alex has been diagnosed six times in the past eighth months with thrush and cheilitis, or yeast overgrowth in and around his mouth. While treating the yeast with Diflucan helps the symptoms and makes them better, something is causing the recurrence of this problem. I knew we would need to get to the bottom of this problem, but I was having trouble finding a doctor who would take a more holistic approach. Feeling frustrated, I have prayed for patience and an answer.

Several days ago, I picked up a magazine advertising local business that had come in the mail a few days earlier. Thinking it was junk mail, I nearly threw it in the trash, but I decided to take a quick look. As I flipped through it, I noticed a picture of a building I recognized: the office building of Alex’s former doctor. A closer look at the ad revealed that a new medical practice had been established in that office building by a father and son who are doctors of osteopathy specializing in nutrition and wellness, like Alex’s doctor. After consulting their website listed in the ad and discovering that they offered the holistic approach I had wanted for Alex, I decided this was an answer to prayers.

Without hesitation, I called their office that Friday afternoon to see if they would accept Alex’s insurance and take him as a new patient. After confirming that they could see Alex, the receptionist was able to schedule us for an appointment for Monday afternoon. Last weekend, I felt hopeful that this new doctor would be able to help Alex, and I looked forward to meeting with him. On Monday, we were pleased we didn’t have to wait for our appointment, and I was immediately impressed by the doctor’s manner: kind, understanding, and compassionate. He interacted with Alex easily, and Alex felt comfortable with him during the examination. As Ed and I discussed our concerns about Alex’s repeated bouts with yeast overgrowth, he listened carefully and explained his ideas clearly regarding what he thought was the cause and what we could do to help Alex. Not only was he likeable, but he also inspired confidence, making us feel that we had brought Alex to the right place.

His assessment is that Alex’s immune system has been weakened, leaving him vulnerable to infections, such as the fungal thrush, the bacterial folliculis, and the viral chicken pox, all of which he has had recently. To strengthen his immunity, the doctor recommended high doses of vitamins C and D3. To address his yeast overgrowth, the doctor suggested that Alex take a prebiotic supplement in addition to the probiotic he has been taking, which will help balance his digestive system. To ease the mouth discomfort the yeast causes, the doctor recommended an old herbal remedy, gentian violet. Armed with this information, we have gradually implemented the recommended protocol, starting with vitamin D3, then gentian violet. Next, we will add the prebiotic, followed by vitamin C.

With Alex, we have learned that adding only one new thing at a time is crucial to measure its effects upon him, whether positive or negative, and the doctor wholeheartedly supported our gradual approach to the new supplements. He wants to see Alex in a month to check his progress, and we hope and pray that the next time we see him we can tell him how much Alex has improved, thanks to his help. The way things have moved quickly and easily into place with this new doctor reminds me that God is in control, and when the timing is right, He will bring the right people across our path and give us a sense of peace, knowing that everything will be all right in the end.
 

“Your own ears will hear Him. Right behind you a voice will say, ‘This is the way you should go,’ whether to the right or to the left.” Isaiah 30:21

Appearance Vs. Reality

 

“Appearances are often deceiving”—Aesop

In last week’s blog entry, “Temporary Bump,” I described dealing with Alex’s recent various health issues.  After fighting yeast overgrowth for months that invaded his mouth in the forms of thrush and cheilitis, we were coming to the end of a month-long run of taking the antifungal prescription drug Diflucan daily, which we hoped would finally mark the end of dealing with candidiasis. After fighting a cold for a week, I was back to feeling good and was thankful that Ed and Alex seemed to have avoided my germs. After taking Alex to the Minute Clinic on Saturday for a sore on his scalp, we believed that he had folliculitis, an infection of the skin easily treated by antibiotics. However, the appearance of a few blisters on his skin made me wonder if something else could be happening. After I posted my blog on Sunday morning, I assumed anyone who wanted to read it could access it online.  What a difference a week makes! I discovered this week that what appeared true last week was not exactly reality.

First of all, some friends and family have told me that lately they have been unable to access the most recent installments of my blog. They can see the picture and the title, but what follows is the text of the previous week’s blog instead of the new entry. Apparently, the old entries are visible, and if they wait a week until I post a new entry, they can then read the entry that did not appear the previous week. However, the newest entry again cannot be seen, other than its title and picture. Trying various browsers, I found that Google Chrome, Safari, and Firefox had no issues showing the blog correctly; the culprit seemed to be Explorer. Because Ed is more tech savvy than I when it comes to online publishing, I asked him to figure out what was wrong with the blog when someone uses Explorer. He found that many blog websites have been having issues with Explorer not showing the complete text, and fixing the problem is not a simple matter. Therefore, I recommend that any readers of my blog use a browser other than Explorer to read the entire text in a timely fashion.  However, those who are devoted to Explorer can just wait a week until the old text decides to make its appearance with the new title and picture.

Aside from the blog posting glitch, this week we finally received the results of Alex’s yeast tests that were done a few weeks ago. A swab culture of his mouth and a blood test to determine the presence of candida antibodies both came back negative, which suggests that he doesn’t have yeast overgrowth, after all. Basically three possibilities exist for these test results: false negative results, successful eradication of the yeast by antifungal medication, or something else has been causing the sores in his mouth. The nurse practitioner who prescribed the month-long use of Diflucan gave us a referral to an ear-nose-throat specialist who might be able to diagnose the problem. With the Thanksgiving holiday, Ed and I decided to wait before making an appointment with the specialist, especially since Alex’s mouth looks much better. Taking him to a doctor without any symptoms seems pointless, and we’re hopeful that he is, indeed, healed of the condition that two doctors and three nurse practitioners diagnosed as thrush and cheilitis, forms of candida overgrowth. Also, Alex has a weird fascination with ear-nose-throat doctors, whom he refers to as ENT’s, because he researched them a few years ago when he wanted to have his voice surgically altered. If we can avoid taking him to an ENT, we may be able to avoid the obsessive conversations about his desire for vocal cord surgery that doesn’t even exist. Mainly, we just pray that that the yeast overgrowth and whatever caused it is finally gone.

Last week’s appearance of a nasty sore on Alex’s scalp sent us to the CVS Minute Clinic, where a nurse practitioner diagnosed him with folliculitis, an infected hair follicle. After giving Alex oral antibiotics and treating the sore with antibiotic cream, we have been amazed and pleased how quickly this infection has healed. The evening after we took him to the Minute Clinic, we discovered a small blister behind his ear and two on his shoulder. After some Internet research and consulting with my mom, sister, and sister-in-law by phone, we diagnosed Alex with chicken pox. Moreover, we suspected that the sore on his head might have also been a blister that was knocked off accidentally and became infected. Even though Alex had the chicken pox vaccine when he was younger, apparently mild cases of chicken pox can occur in up to ten percent of people who have had the vaccine. We watched Alex carefully this week; fortunately, he had no more eruptions of pox and didn’t seem bothered by those he had, which are healing nicely. Perhaps this light case of the disease will finally give him the full immunity he apparently lacked.

After we seemed to be done with illness, a couple of days ago Alex started showing signs of the cold I had last week. Thankfully, he seems to have a mild case, as I did, but he has a little bit of congestion. With his various contagious ailments, we decided not to risk exposing anyone to whatever Alex might have that could be catching, and so the three of us spent a quiet Thanksgiving at home. Among the blessings for which we are thankful are the doctors and nurses who have helped us find ways to make Alex healthy again and for the improvements we have seen in him. I’ve heard people say that fear is an acronym for “false evidence appearing real.” Even though I first heard actor Gary Busey say that on the reality television show Celebrity Apprentice, where his behavior was a little scary, I think he makes a good point. So often, we worry about things that seem really frightening, and in the end, they are not what they seem.  I have fretted too much over various symptoms Alex has shown, and I need to remember that God is taking care of him, making sure he’s going to be fine. No matter whether Alex has thrush, cheilitis, folliculitis, chicken pox, a cold, or any other illness that looks like these conditions, he’s on his way back to health. For that, we are truly thankful.

“But all who listen to me will live in peace, untroubled by fear of harm." Proverbs 1:33

Temporary Bump

Alex will turn 21 in less than a month, and one would think after that much time, I’d pretty much have most things figured out in this task called mothering. However, from time to time, I find myself temporarily baffled, engaged in an internal conflict as to what is the best thing to do. In these situations, Ed usually defers to my judgment, which sometimes adds to my anxiety, wondering if he really agrees with my decision or if he just thinks he shouldn’t question my maternal instincts. Anyway, one of those moments arose yesterday.

As I have written in previous blog entries, since June, Alex has been dealing with yeast infections in and around his mouth, and we have relied upon six different doctors or nurse practitioners to have him assessed and treated.  Three of the times, he became symptomatic on weekends, which meant taking him to a clinic open when doctors’ offices are not. Once we took him to urgent care when his regular doctor would not see him since he is now on Medicaid for his autism, and twice he has seen nurse practitioners at his new family doctor’s office. A couple of times, I have called the nurse practitioner who oversees his psychiatric medications on Friday afternoons to get prescriptions over the phone so that we would not have to take him to the off hours clinics. While all of these health care practitioners—all women, I might add—have been very sympathetic, compassionate, and helpful, I wish we had one consistent doctor or nurse practitioner who has seen him every time for consistency. Nonetheless, all have agreed upon the same medication for treatment, which is reassuring. This last round of the antifungal medicine, Diflucan, has spanned a month of daily doses, which Alex will finish on Monday.

A couple of days ago, I was thinking about this month of daily antifungals ending, hoping and praying that the medication had finally kicked out the yeast that has been invading Alex’s mouth. Ready for him to be healthy after all this time, I was encouraged that his mouth does look better. Then, this week I came down with a cold that was thankfully mild, which I attribute to taking Vitamin D drops. Even though my cold wasn’t that bad, I prayed that Ed and Alex wouldn’t catch the cold from me, and I faithfully washed my hands to try and keep the germs to a minimum. All week long, I have watched Alex for signs that—despite my best efforts—he has caught the cold, too. Fortunately, both Ed and Alex seem to have escaped getting the cold I’ve had.

With my cold gone, my guys remaining healthy, and the end of Alex’s yeast treatment hopefully in sight, I thought maybe things were finally on the right track health-wise. We were getting ready for a trip to Target, one of Alex’s favorite stores, to pick up a few things when I offered to help Alex comb his hair. Since he’s nine inches taller than me, the only way I can comb his hair properly is to have him sit while I stand over him. As I began combing his hair, which I had cut fairly short last weekend, I noticed a red splotch in his scalp that had not been there the previous day. Looking more closely and moving aside his hair, I saw that the red splotch was not just inflamed skin on his scalp but oozing fluid. This fiery red weeping sore was about an inch in diameter on the crown of his head. Having never seen anything like it, frankly, it scared me.

Not wanting to send Alex into panic mode, I knew better than to let him see my fears or let him know how bad the spot on his head looked. I told him he had some sticky stuff in his hair that I wanted to wipe with a washcloth, and he was agreeable. As I dabbed the sore spot, he never flinched or complained, which was a good sign. I asked him if his head hurt, and he said no, another positive. When Ed came to see why we were taking so long to get ready, I motioned him over and pointed to the sore on Alex’s head, and I suspect the facial reaction of shock he had was the same I had when I saw it for the first time. He mouthed, “What is it?”  In response, I shrugged my shoulders. However, I suspected an infection, so trying not to alarm Alex, I suggested we take his temperature, which was only slightly above normal. Nonetheless, my mother’s instinct that didn’t quite know what the cause of this sore was made me think that we needed to have it checked, so we headed for the CVS Minute Clinic here in town, where we had been pleased to get Alex such good care several weeks ago when his yeast infection flared on a Saturday afternoon.

Grabbing Alex’s medical file that contains his list of medications, our legal papers granting Ed and I authority to make medical decisions for him, and a copy of his Social Security card, I followed Alex and Ed out the door to the local CVS Minute Clinic. On the way there, questioning my decision, I asked Ed if I was overreacting to have Alex checked, but he confirmed my decision by telling me he agreed with me that we needed to have him examined. Fortunately, we didn’t have to wait at all, and the nurse practitioner was very sweet and kind to Alex and us.  After taking his temperature, pulse oxygen, and blood pressure, which were in the normal range, and listening to his heart and lungs, which sounded fine, she took a closer look at the sore on his head, which she diagnosed as folliculitis, an infected hair follicle apparently common in teenage boys and young men. She said her own sons had even had the same thing, which was comforting, especially since she commented that it looks worse than it really is. To assess whether the infection had spread, she carefully checked the lymph nodes in his neck and head, all of which were fine. To treat this infection, she gave us a ten-day run of antibiotics twice a day, and she recommended that we put antibiotic cream on his head to help heal it. The only concern we had about the antibiotics is that they can cause yeast overgrowth, which we’ve been fighting for months. She said that since he’s been on antifungals, he should be fine. Nonetheless, I will double his dose of probiotics to keep his digestive tract in good order while he’s on the antibiotics and hopefully keep the yeast from repopulating his mouth again.

Satisfied that Alex’s newest ailment had been quickly, properly, and accurately diagnosed, Ed and I were content that we had a plan to treat the infection on Alex’s scalp. In the words of Saturday Night Live character Roseanne Roseannadanna, though, “It’s always something! If it’s not one thing; it’s another.” Last night as Alex was getting ready for bed, I noticed a small spot on his shoulder, and upon taking a closer look, I saw that it’s some type of fluid-filled blister. A closer inspection revealed a similar tiny blister just below his ear. Of course, that sent me to the Internet to see what these strange blisters could be. With no definitive diagnosis, I’m hoping that the antibiotic will take care of them, as well.  If not, we’ll be headed back to the doctor yet again. In the meantime, I thank God for the compassionate doctors and nurse practitioners who have been taking care of Alex and for God’s healing that surpasses anything humans can do. As we wait, I’ll keep a close eye on that sore and those blisters, praying that they disappear quickly and making sure that I do all Alex needs for me to do as his mother and caretaker.

“For our present troubles are small and won't last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!” II Corinthians 4:17

While We Wait

 

Recently, Alex has developed some new routines, and we’re still battling with an old foe. Since all of these begin with the letter t, I thought I’d lump them together this week. The new routines involve Times Square, the Target Café, and therapy, while the old foe is the summer plague of thrush.

As I have mentioned in previous blog entries, Alex loves to watch videos on You Tube. Although he mostly watches country music videos, he also likes to watch clips from television game shows. The past couple of weeks, he has wanted to watch videos from various years of Dick Clark’s Rockin’ New Year’s Eve where they count down the seconds until the new year as the ball drops in New York’s Times Square. Considering Alex’s love of time, calendars, and holidays, I suppose his fascination with watching this annual celebration makes complete sense. In addition, the narrator of these videos also tells what the temperature in Times Square is on that particular New Year’s Eve, which is an added bonus for Alex, who loves weather.  Even though he has watched some of these videos several times, he gets just as excited watching the seconds wind down and the ball drop as the crowds in the videos do when it happened in real time. Moreover, even though Alex and I like Ryan Seacrest as a host, we’ve found by watching these old videos that no one rings in New Year’s Day like the late great Dick Clark.

Along with watching the countdown of the final minutes of each year, Alex has also discovered that he really likes the Target Café. Lately, about once a week, he and I have gone shopping at our local Target store with my mom. Since Alex just likes going places, he doesn’t seem to mind browsing through the store with his mother and grandmother. As a reward for his patience and good behavior, my mom treats him to a Sierra Mist soft drink and a bag of Lay’s potato chips from the Target Café at the end of our shopping trip. Besides enjoying his snack, Alex seems to like sitting in the café and watching people go by. Last week, Ed and I took him to Target, and as we were nearing the end of our shopping, Alex started chanting something softly. Ed couldn’t figure out what Alex was talking about, but I knew what he was saying that he wanted—“Target Café, Target Café, Target Café.” Hence, Ed was introduced to the ritual of stopping at the Target Café at the end of a shopping trip.

The third new routine is therapy--behavioral therapy, to be more precise. We have done a variety of therapies with Alex over the years, including speech therapy, occupational therapy, sensory integration therapy, Floortime therapy, cranial therapy, visual therapy, music therapy, nutritional therapy, and chelation therapy. However, behavioral therapy is new for us because until about a year ago Alex’s behavior was mostly quite good. This summer, we began searching for behavioral therapists with experience in autism, and we were fortunate to find an agency in a nearby town that handles people with autism and that had openings for new clients. Finding a therapist with autism experience is tricky enough, and those who do have autism training often have so many clients they cannot take on any more. One of the blessings of Alex qualifying for state funding this summer was that behavioral therapy is covered by his Medicaid waiver services. Not only are we fortunate to have found a behavioral therapist who works well with Alex, but also the state pays for this valuable therapy.

When we started behavioral therapy in August, most of the work was spent assessing Alex’s behavioral issues. His therapist and her supervisor who also observed Alex and interviewed Ed and me felt that many of his actions were attention-seeking behaviors. For example, if Alex wanted our attention, he found it easier to grab our arm than to tell us what he wanted. After several weeks of observation and gathering data, his behavioral therapist developed a behavior plan. Now that the plan has been written, she has been able to focus on working with Alex one-on-one on a weekly basis at our home. Alex eagerly anticipates the sessions with his sweet and enthusiastic therapist Melissa, who also seems to get a kick out of working with him. While she develops social stories, plays games, and talks with Alex, I sit in another room and try to eavesdrop on their conversations. Apparently, Alex is funny during their time together because I frequently hear Melissa laugh in amusement at his comments. She seems to bring out the best in him because he has been remarkably cooperative and well behaved throughout their sessions. I suspect Alex is happy to have someone other than his parents and grandparents to spend time with him. We’re pleased that Melissa is helping Alex develop his social skills and that he enjoys working with her so much.

While the new routines have been welcome, the hanging on of the annoying fungal infection thrush has been frustrating. Alex was first diagnosed with a yeast infection in and around his mouth in June, and we’ve been trying to clear up the thrush and cheilitis ever since then with anti-fungal medication. After weekly doses of the antifungal drug Diflucan didn’t seem to be clearing up the infection completely, his family nurse practitioner put him on daily doses for two weeks. Although he seemed better, a few weeks later, the symptoms flared up again. Last Saturday, we took him to our local CVS Pharmacy’s Minute Clinic, where a very sweet and sympathetic nurse practitioner confirmed my mother’s instinct that he again had thrush and cheilitis. She gave him two more doses of Diflucan and recommended we take him back to our family nurse practitioner.

On Tuesday, we had an appointment with another family nurse practitioner, who understood our frustration with trying to get rid of the yeast overgrowth and concerns that for Alex’s well being. She decided to do a culture by swabbing his mouth, gave us orders to have a blood test done to see if, indeed, his candidiasis, or yeast infection, is systemic, and prescribed a month of daily doses of Diflucan. We were pleased that she took such an aggressive approach, which is what we wanted. Although we’re curious as to what the test results will show, we’re pleased that Alex seems to be responding well to the medication as his symptoms are improving. We pray that this run of Diflucan will rid his body of the yeast overgrowth that irritates his mouth and throat, making him irritable. Moreover, we believe that once the yeast overgrowth abates, we will see great improvement in Alex overall. Once again, God gives us patience as we wait for Him to do the true healing, but like the eager crowds in Times Square on New Year’s Eve, we can’t help but count down: “Five, four, three, two, one.”

“For I am waiting for you, O LORD. You must answer for me, O Lord my God.” Psalm 38:15